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Because of the stroke and the concern about damage, neurology had referred Elanor to Early Intervention when she was sent home on 11/30.
She was evaluated mid December, and was qualified mid January. The plan was supposed to be written today, but was put off until Friday due to snow/ice, and the nurse will come 2/10 for the first time and then regularly starting at the end of February (we both have trips scheduled which prevents a visit between 2/10 and 2/26).
The process is super slow.
Truth be told, I’m not that worried right now. Elanor seems like she’s hitting all the milestones she’s supposed to be hitting so while I’m happy to have EI involved as E gets older (especially in the 1-3 year range, but that’s not for nine months yet) I’m kind of blase about how long it takes right now.
But I can imagine that it would be painfully slow if you were actually worried about your 2 or 3 year old.
Today is the 36th anniversary of Roe V Wade. While I have never had to make the difficult choice of whether to keep a pregnancy or not, it was a choice I gave consideration to theoretically once I began to think about becoming sexually active. Knowing how easily my mom had become pregnant with me, I was deathly afraid of repeating her history of a young accidental pregnancy (she was 21). And unlike her, if it had come down to college or pregnancy, I suspected I might choose college. I have a former friend who chose to have an abortion when we were in our mid-twenties. She was in an abusive relationship, and she wasn’t prepared to (a) be a single mom and (b) have this person in her life forever…so she chose to abort the baby. It was actually her second abortion-the first was the summer in between high school and college-her parents were in the midst of a nasty divorce, both she and her high school boyfriend were heading off to college in six weeks, and her weight had dropped to about 90 lbs. She always said she had no doubts and no regrets about the first abortion, but that the second, while the right choice for her, was much harder. I can now say that I know how difficult pregnancy can be. I certainly didn’t have an easy one. I can only imagine the emotional damage having to go through all of that carrying an unwanted child could cause. One of the few things that kept me going was how desperately I loved Hope and Elanor. I have, technically, had an abortion. The D&C after Hope died in utero was an abortion. It makes me so angry to hear anti-choice people lie about the process of abortion and how horribly the remains are treated. I can attest that Hope was removed from my body respectfully and her remains were treated reverently. What makes me angry is that my daughter will not grow up with the same choices I had. While Roe V Wade is safe, more or less, it is constantly being chipped away at. Many women live too far away from the nearest location where they can procure a safe abortion. Women can no longer receive late term abortions that might save their lives (such as D&E’s-what the religious right misguidedly calls “partial birth abortions”) Parental notification laws tie the hands of teens. They are expensive. And then to make it all worse, you have states like Virginia, who are trying to criminalize miscarriage (don’t believe me? go to http://www.richmondsunlight.com/bill/2009/sb962/ ). And let’s not forget that Bush screwed us one last time by sending through his physicians conscience executive order on 1/19/08 allowing any pharmacist, doctor or medical professional the right to refuse birth control, abortion counseling, or other reproductive freedoms on the grounds of “religious convictions”–in other words to avoid doing their JOBS (Don’t like abortion? Become a podiatrist, why don’t you?!). The second wave of feminism said that the personal is political. This is especially true when we think about reproductive freedom because they are literally trying to impose laws on our physical bodies. So for today I will put aside my fears for the future and simply say thank you for Roe V Wade.
Many years from now, I’ll be able to tell Elanor that she witnessed the beginning of the Obama years. She sat in her Bumbo between her parents, both of whom were tearing up as we watched the first person of color take the oath of office of the President.
My daughter is biracial, and when she goes looking for role models that are like her, I’m proud that she’ll have Obama to look up to. She will never wonder if there will ever be a person of color in the highest office of the land. She’ll take for granted that the color of her skin is not a bar to achievement.
I don’t think that Obama will solve all our problems, or even that I’ll agree with him all of the time. But I am proud to call him my president, and Elanor’s.
We’ve been trying to do more breastfeeding since the LC came and it’s been a disaster. I think it’s mostly positioning and the fact that I’m short about 5 arms from what I need. At any rate, the LC is coming back later this week to help again.
Last night we met with a Lactation Consultant in our home. I had gotten her name from my pediatrician, who said that mothers had said to her (the pediatrician) that this LC was great. I’m glad I took that recommendation because she was WONDERFUL.
I had kept Elanor a little hungry so that she would be up for feeding when the LC arrived. NOT starving-just giving her enough food that she wasn’t crying but eager for food.
We had already briefly discussed E’s history and how we got to the place we’re at in our breastfeeding journey. I let her know that I had tried to put E to breast a few times in this past week and she had refused to even latch.
The LC undressed the baby, weighed her, and asked me to undress from the waist up. We did some skin to skin and Elanor began to edge to one side. I had always thought this was Elanor having some trouble with staying upright because while she has improved head control, it’s not perfect. The LC explained that E was going for my breast. She let Elanor edge down and E began trying to get on the breast unsuccessfully before E got very upset.
We popped the pacifier into E’s mouth and the LC told me she was doing all the right things and asked if I had considered using nipple shields. I actually own a nipple shield, but when I tried to follow the included directions I had had NO success so I had just put it to the side. The LC showed me how to use it, and E went to the breast. Then the other.
She successfully took 1.3 ounces total between both breasts!
Of course that’s not actually enough for a single feed, but it’s a HUGE success. The LC said that Elanor was doing an awesome job and helped us come up with a plan of attack.
Firstly my goal is to raise my supply a bit. At most I can make about 18 ounces a day and Elanor is eating in the neighborhood of 22-25 ounces a day. I’m doing the pump equivalent of a “nurse in” where I am pumping hourly as much as I can with a few longer breaks-trying to fool my breasts into thinking that there is a baby hungrily trying to get fed.
Secondly, we are to try to get her on the breast with the nipple shields. When possible I am to feed her for as long as is comfortable (until she gets upset and dribbling expressed milk on the shield doesn’t help) and then finish her off with her bottle, and then pump (what’s called triple feeding). I will be focusing more on this after the nurse in, although I plan to try and nurse a few times over the next few days.
Finally, we are to do as much skin to skin as we can.
I also bought the book she recommended, entitled “The Breastfeeding Mother’s Guide to Making More Milk.”
I’ll report back on how things are going.
I noted yesterday that this past Monday we were given the green light to stop supplementing Elanor with extra calories, which means she can now drink unaltered breastmilk. Which means we can try to create a breastfeeding relationship.
For those who are new to the blog, my daughter came out of the womb with some breathing and blood sugar issues. The breathing problems (which resolved in about 4 hours after her birth) meant she had to go to the NICU immediately after birth. I only got to hold her for a minute, and was not allowed to attempt breastfeeding (not that I even was thinking about it at that point). Her blood sugar issues meant we had to supplement her with formula to spring her from the NICU, although I began to pump immediately and gave her my colostrum via syringe. We also began to try breastfeeding in the NICU with the help of an LC and some nurses, but only had one successful latch after many sessions where she fell asleep or wouldn’t latch. When she went home I would try to put her to breast, but without much luck, probably due in part to the fact that she was becoming severely ill. At a week old, she was hospitalized with a life threatening infection. She was on an iv and ventilator for a week, and the week after that was too weak to suck-and was fed by a tube down her nose. Her final seven or eight days in the hospital, her suck reflex returned and she began to take my breast milk, fortified for extra calories to help her gain weight, via bottle.
The last few days in the hospital and our first few days home, I began to put her to breast again, and miraculously she would occasionally figure it out and drink. But I was scared. I was scared that I was hurting my daughter by not giving her enough calories…that it was wrong to make her exert so much effort…that she would get sick again, basically. My anxiety reached such a point (which, looking back, is probably an early manifestation of my PPD) that I stopped trying to breastfeed altogether at around the second week of December.
In part, I despaired that we would EVER be allowed to stop supplementing. Elanor left the hospital in the third percentile for her weight, and she seemed so small and fragile in those first terrifying days without 24/7 medical help in the room at all times or a short button push away.
So I pumped.
And pumped.
And pumped.
I have been pumping every single day for 10 weeks and 4 days as of today (Friday 1/16)…that’s 74 days. Seventy four days of hooking myself up to a machine and watching milk squirt out into hard plastic containers. In fact, I’m pausing from writing this post to hook myself up to my Symphony to pump.
My husband and my friends have been nothing but supportive. My good friend who has a son two days younger than Elanor has gone so far as to give me some of her excess supply to help me meet Elanor’s needs. I have taken Reglan. I am taking Fenugreek. While part of me despaired that I would ever actually breastfeed my daughter, enough of a glimmer of hope remained that I kept it up even when there were days when I fantasized about quitting pumping at every single pump. When formula was the easiest road, I resisted it even as I fantasized about it.
Now we have a chance.
I have a Lactation Consultant coming on Saturday night. I am, in equal parts, elated and terrified.
Trying to breastfeed feels very high stakes. I very much want to breastfeed my daughter to the full extent of my supply. But I’m so scared that Elanor will not want to. The bottle is inherently easier, and she seems to have forgotten what my breasts are for. I have tried to put her to breast multiple times this week and all she does is scream…she won’t even latch. I can not force this to happen. I can’t want it into existence. I can only take the advice I am given, be open to trying anything and everything (at this point, I’ve even considering re-birthing, which several months ago I would have fallen over laughing at the very idea of as WAY too “crunchy granola” for me).
I’m also going to start attending breastfeeding support groups, and am going to reach out to the local LLL, for all that I generally find them to be a bit preachy and pedantic.
I know that it is possible, and Elanor is a smart little girl, and all I can do is hope.
I decided to go back and post the Care Pages Updates that my husband and I wrote while Elanor was in the hospital. I backdated them (they’re all in Nov 08 ) for the days and approximate times they were posted on the Care Pages site. As I didn’t have the energy to post here often in November, I feel that doing this fills in many of the gaps of our journey. The category is called “Elanor’s Hospital Stay”
I feel like all I’ve done over the past two weeks is sit in doctor’s waiting rooms.
Elanor has had Five doctor visits and one visit from the home nurse. I’ve had three therapy appointments, an appointment with the post-partum psychiatrist, and two allergy shots. From Jan 5 through today, we have not had a weekday where we haven’t seen a medical person of some sort.
Which is exhausting.
These were all necessary visits, but it’s been a lot of information in a short period of time, and digesting it has required a lot of energy (and time off from work for my husband). Luckily it has been largely positive, so I can’t really complain.
First of all, the best news we have received in this new year–Elanor has NOT suffered any hearing loss. Apparently it is very common for babies who have spent significant amounts of time in the NICU or the PICU to be nonresponsive to sound. Which, when you think about it makes a ton of sense. Normal babies don’t have people coming in and out of their rooms at all hours talking to their trailing med students and residents. Healthy babies don’t spend three weeks hooked up to a monitor that is constantly monitoring heart rate, blood pressure, oxygen saturation, and pulse rate–the constant beeping and multiple times a day alarms. Healthy babies don’t have the alarm going off when their medication/IV is five minutes away from being done and again when it’s done. In short, healthy children aren’t innundated with sound the way that Elanor was in the first month of her life. OF COURSE finger snapping, hand clapping and even a smoke detector going off (my husband forgot to turn on the over stove vent fan) aren’t interesting to her…she heard much louder on a regular basis. It’s just not impressive to her.
If you’re interested, yes, I still plan on doing baby sign with her. I’m doing just “milk” right now, and we’re probably going to do two or three others. However, at two months, it’s more for us to get us used to doing the sign than any developmental readiness on her part-and yes I do know that.
The second best news was from this past Monday’s two month well baby visit. Having dropped Elanor from 24 calories per ounce to 22 calories per ounce, she had gained 11 ounces in two weeks. This was enough for our pediatrician to give us the green light to stop supplementing altogether. The Lactation Consultant is coming Saturday because at this point Elanor seems to have forgotten how to latch altogether and just freaks out when I try to put her on the breast. I have faith that she can learn how to, but I have no illusions (and much fear) that this road is going to be long and difficult…and that it will require much patience. She took her shots well, and had a small fever, but nothing that cuddles and some doctor approved baby tylenol didn’t cure.
The remaining three doctor’s appointments and the home nurse visit were, of course, related back to her infection, the septic shock, and the stroke.
The home nurse initially came three times a week, then twice and will now be coming once a week to take E’s blood pressure, as E is on a blood pressure medication and needs monitoring to make sure that the dosage is staying current to her needs.
We saw Pediatric Neurology last Friday and they were VERY pleased with E’s progress. Her preference for her right side is balancing out (it is abnormal to have a side preference at her age), she is less stiff than she was when hospitalized, and she is doing all the things that healthy babies do at two months like lifting her head and cooing.
We saw Pediatric Nephrology (the kidney doctor) on Tuesday and had a slight adjustment in her medication done, as well as discussing the plan to wean her from the blood pressure meds. The reason that the Kidney doctor is in charge of blood pressure medication, as opposed to cardiology, is that apparently in infants hypertension is almost always caused by a kidney malfunction and not a cardiac one. We have had her heart ultrasounded as recently as last month and it is totally normal. Thus far her kidney’s have been normal as well, and it is assumed that the hypertension is residual from the hit they took when she was in shock, and that as her body grows and finishes healing that the hypertension will dissapear.
Today we met with the Pediatric Stroke Team, which consisted of a hematologist, another neurologist (examining E’s case from a stroke perspective as opposed to the regular neurologist we see who is making sure that she is developing normally) and a developmental Psychiatrist. They are confident that they understand why she had a stroke and that she is not in any danger at this point of the bleed repeating. The short version that I understand and took away is that when she started getting sick, her body used up all of its clotting factors (which they could see in the blood draws done while she was in the ER or the PICU that first day) and it took three to four days for her numbers to normalize, which is why the bleed happened on day two in the hospital. There really isn’t anything that could have prevented it as E was getting platelets and red blood cell infusions multiple times per day in those early days. The most important thing is that the window for it re-appearing is over, and the imaging that was done only showed improvement and not further bleeding. They noticed that she had been very anemic and did a heel stick to check and see if she still is (and if so, hematology will want us to give her iron supplements in the short term). They want some additional blood drawn, but we requested that it wait until E has blood drawn for the Gastroenterologist in a few weeks as she is a hard stick and has had more than enough needles in her life already. We will meet once more to review test results, and they think that we won’t need further follow up from them other than a Developmental Psych eval before she starts pre-school (which is basically the kind of evaluation done to check for any kind of learning disability, developmental delay or special need that isn’t physical) when she’s in the neighborhood of 2-3 years of age.
While I am an atheist, I grew up Catholic enough to want to say that Elanor must have one hell of a guardian angel…or at the very least should never gamble as she seems to have used up all of her luck for her lifetime.
It’s far to early to say anything definitive, but Elanor may have left this experience with little or (fingers crossed) no long term effects (other than some white hairs on me beneath the hair dye).
As for me, the PPD is manageable at this point and the good days have outnumbered the bad since my last post.
I haven’t posted here recently. Post partum depression reared it’s ugly head and the experience was bad enough that I couldn’t bring myself to write about it. I couldn’t bring myself to write about anything else that was going on because while in the midst of depression, nothing else IS going on.
Oddly enough, I broke the day after an evening alone in a hotel room with my husband without the baby. My mother and aunt had given us some “12 hour date” coupons for Christmas and had offered to make this one a 24 hour date. So we checked into a downtown hotel, ordered room service, hung out in the hotel’s jacuzzi and pool, watched a movie…and fell asleep without having sex. We woke up, ordered room service…and fell asleep. So our sexy little get away had very little sex. It’s sad because we can manage to have sex when she’s right there, but given the perfect opportunity, we failed miserably.
Anyway, we came home fairly refreshed. But over the course of the day and into the night Elanor’s cries were more piercing, more irritating and my response was to grow more apathetic. I began crying. I couldn’t stop crying. Inexplicable misery soaked into my skin and no amount of hiding in the shower and no amount of scrubbing my skin raw with soap and a washcloth could clean it away.
I ended up calling for help. I called my therapist and went twice last week. I called my psychiatrist (my therapist can’t prescribe) and set up an appointment and was given the green light to increase my dosage of Zoloft. I called my aunt who came and stayed for a week. I asked my husband for help and he gave it. I shared my misery with my friend who has a son the same age as Elanor and she let me know in every way that she was there for me.
I was not, contrary to the opinions of the voices in my head, alone.
I am lucky, I suppose, that my depression doesn’t overwhelm me to the point where I am unable to see that I need it. I am also lucky in that I get moments of light breaking through the darkness, moments of happiness in my despair, and those moments give me hope that things can and will get better.
One of those moments of happiness was the first meeting of my New Mom group. While Elanor’s medical stuff is radically different from what the other mothers are going through, there are things that I am experiencing that they are as well, and I walked away feeling less alone. I think the class will be worth the money for that alone, even without learning other tricks like the “super swaddle.”
Elanor herself is capable of shooting sun’s rays through the depression. Her smile, her joy in discovering that she can bat at things, and the way she snuggles against me are powerful. Even in my worst moments, it’s hard not to smile back at that unrestrained glee in Elanor’s smile.
The last few days have been better.
Today was proof that things are getting better, at least for the moment. Elanor had her two month shots today, and has been cranky. She will NOT let me put her down. Instead of it becoming overwhelming, I held her until I remembered that I had sling options, and then I’ve had her in the MOBY for several hours.
I don’t expect that the day will be without clouds, but at least it feels like dawn has broken and my darkest night is over.
Elanor was two months old Saturday. It’s hard to believe that it hasn’t been longer or shorter. On one hand, my life before E feels really distant from where I am now; that it must have been more than three months. On the other, it’s shocking that she’s two months old already-wasn’t she JUST born?!
I can also claim two months of breast milk giving my daughter nutrition. Sure there’s been the 1/2 and 1/2 bottle here or the occasional bottle of formula there, but I can claim that the majority of her nutrition and weight gain is thanks to my breasts. I’m two-thirds of the way to my original goal of 3 months, and that’s something to celebrate. I’m praying that we can soon start breast feeding…she is down to the 22 calories per ounce, so that’s pretty minimal supplemental calories.
Elanor is lifting her head, batting at objects, and vocalizing. She usually has one 5 hour stretch of sleep…not at night, but hey, a 5 hour stretch is a 5 hour stretch. She just, this week, grew out of the newborn Carter’s stuff and is now wearing the 0-3 month stuff, much to my dismay.
